C. difficile – Are your guts ever normal again?

Posted by sue6408 @sue6408, Jan 27, 2019

Does anyone know any body that has recovered from c.diff (guts back to pre-c.diff status ) . I have been negative for a year and still have bloating every time I eat anything and sporadic diarrhea. I need maternity clothing to eat and be comfortable. I have 0 appetite since I was initially infected.I am on creon 36,000 . this helps some what with bloating,I take papya&pineapple enzymes not helping, and floraster 2xday not sure about that.I have tried the FODMAP diet, I avoid many foods on that diet. I am seeing an RD, just finished an elimination diet with her. If I eat I bloat there for I am. Bottom line...are my guts ruined forever ?

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@pines

@terridrag My heart goes out to you. With my last (4th) episode, last October, I lost 10 pounds the first two weeks. I put it all back on over the holidays. Try to stay positive and hopefully you'll feel better as soon as you can get off the Vanco. And take Florastor daily. Please keep us updated how you're doing.

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I will thank you

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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I have had 3 episodes and finishing Vanco. I take Florastor twice daily and I too am lactose intolerant. I have days when I can eat some foods but if I eat something wrong I know the next day. I feel that my colon can not absorb my food so I empty out the next day. I then have hunger issues and the cycle of disappointment repeats itself. I am glad there are those of you that are fortunate enough to beat this. I hope I will be one soon to the person who has just be diagnosed do the Florastor if you are able and be your own advocate and get the dificid if you can. I have read many of these posts and it seems that is the best treatment. I know it’s expensive but I would pay every dime I have to be healthy again. When I am better I will be addressing the clindamycin issue by writing a detailed letter to the FDA This should not happen to anyone else .. prayers to all fighting this battle🙏🏻

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@losthope

I have had 3 episodes and finishing Vanco. I take Florastor twice daily and I too am lactose intolerant. I have days when I can eat some foods but if I eat something wrong I know the next day. I feel that my colon can not absorb my food so I empty out the next day. I then have hunger issues and the cycle of disappointment repeats itself. I am glad there are those of you that are fortunate enough to beat this. I hope I will be one soon to the person who has just be diagnosed do the Florastor if you are able and be your own advocate and get the dificid if you can. I have read many of these posts and it seems that is the best treatment. I know it’s expensive but I would pay every dime I have to be healthy again. When I am better I will be addressing the clindamycin issue by writing a detailed letter to the FDA This should not happen to anyone else .. prayers to all fighting this battle🙏🏻

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@losthope I read a study that was done in 2011 regarding vancomycin vs fidaxamicin (Dificid). The major difference is that Vanco also kills your good bacteria. The Dificid only attacks the Cdiff spores. Without that good bacteria the Cdiff spores just continue to flourish. I had people wonder why I kept having relapses after taking Flagyl and Vanco twice (once for 10 days and once doing the Vanco taper). I felt like they didn't think I was cleaning the bathroom or washing my hands enough. People don't realize that Cdiff is hard to kill and except for Dificid, the other treatments are also killing your good bacteria along with Cdiff spores. There's also two different strains of Cdiff. You could also have a different strain than the original infection. This week, on the 26th, it will be three months since my 4th bout with Cdiff. Prior to taking Dificid, three weeks was the longest I had gone without relapsing. I wish you well in 2019.

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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Thanks for the info. I am going to share

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@pines

@sandyabbey I was in hopes you would give us an update after finishing the Dificid. I agree with you regarding the cost. I could have taken it after my first bout of Cdiff when the Flagyl didn't work. But I decided, because of the cost, to go with Vancomycin. And after doing 10 days on Vanco and then another relapse and doing the Vanco taper, I finally said enough and I'll pay the Dificid high price. Our insurance paid all but about $1,000. Terrible. But they say it's because it's a new drug and is only used for C.diff. I finished the Dificid on Oct. 26th and have not had a relapse. I knock on wood every time I say that. I now need to make an appointment for a colonoscopy. I'm worried about doing the cleaning and going through the process. And like you, if I have another relapse, I'll do the FMT. 2018 is a year I'm happy to put behind me. 🙂

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I’m 26 days post Dificid. So far no relapse, but I had a scare lady night. I had a watery stool once , but I haven’t had any like that. I’ve had cramping during this time also. I see my GI Tuesday Unless get worse before then. I’m sure anxious. I’m going to ask for a retest. I hope you do well @pines

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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Sorry to hear that. My stomach is so sensitive. I don’t like being sick. I am always nervous when j eat anything.

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@sandyabbey

I’m 26 days post Dificid. So far no relapse, but I had a scare lady night. I had a watery stool once , but I haven’t had any like that. I’ve had cramping during this time also. I see my GI Tuesday Unless get worse before then. I’m sure anxious. I’m going to ask for a retest. I hope you do well @pines

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@sandyabbey Thank you so much for the update. I'm 3 months today post Dificid. And like you, I still worry every time I have any cramping or a loose BM. I'm finding a lot depends on what I eat. Green salads and lots of veggies can give me a scare. (The things that are good for us.) 🙂 I still take Florastor daily and have also found another one that's is about 1/2 the price but still has 440 mg of S Boulardii. I order it from Swansons Vitamins on line. I plan to take S Boulardii for the rest of my life. Our situations are very parallel. We both contacted this from Clindamycin. We both have had 4 bouts of Cdiff. We both took Flagyl, Vancomycin and finally Dificid. We are both on social security. Let's hope and pray we are now Cdiff free. I think posting on this site is also helpful to those who have gone through our situations. Especially if we can stay healthy. And I'm in hopes that the price of Dificid (fidaxamicin) will come down so that more and more patients can get it after a second relapse. People should not have to go through 4 bouts of Cdiff. I wouldn't wish the 6 months of 2018 that I went through on my worst enemy. Stay well and please update us after you see your GI.

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@losthope

Sorry to hear that. My stomach is so sensitive. I don’t like being sick. I am always nervous when j eat anything.

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@losthope How are you doing since finishing Vanco? I went for three weeks after finishing the Vanco taper before I relapsed. I was then prescribed the Dificid. Hopefully, the Vanco will work for you.

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@pines

@sandyabbey Thank you so much for the update. I'm 3 months today post Dificid. And like you, I still worry every time I have any cramping or a loose BM. I'm finding a lot depends on what I eat. Green salads and lots of veggies can give me a scare. (The things that are good for us.) 🙂 I still take Florastor daily and have also found another one that's is about 1/2 the price but still has 440 mg of S Boulardii. I order it from Swansons Vitamins on line. I plan to take S Boulardii for the rest of my life. Our situations are very parallel. We both contacted this from Clindamycin. We both have had 4 bouts of Cdiff. We both took Flagyl, Vancomycin and finally Dificid. We are both on social security. Let's hope and pray we are now Cdiff free. I think posting on this site is also helpful to those who have gone through our situations. Especially if we can stay healthy. And I'm in hopes that the price of Dificid (fidaxamicin) will come down so that more and more patients can get it after a second relapse. People should not have to go through 4 bouts of Cdiff. I wouldn't wish the 6 months of 2018 that I went through on my worst enemy. Stay well and please update us after you see your GI.

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@pines. I had my gall bladder out maybe 20 or so years ago and haven’t really had normal bowel movements since. A few years ago I had three bouts of cdiff. And had not had it since. No idea where I got it as I was not on antibiotics when I first got it. Since then I deal a lot with diarrhea and that is no fun. But you deal with it. Now my concern is copd and lung cancer so to meI put on my depends and hope I dont have an accident and enjoy the day I have. Some of these things are not easy to go thru and that’s when we find out how strong we are. Keep the faith do what you have to and always have someone to talk to and rely on More power to all of you.

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@sakota

@pines. I had my gall bladder out maybe 20 or so years ago and haven’t really had normal bowel movements since. A few years ago I had three bouts of cdiff. And had not had it since. No idea where I got it as I was not on antibiotics when I first got it. Since then I deal a lot with diarrhea and that is no fun. But you deal with it. Now my concern is copd and lung cancer so to meI put on my depends and hope I dont have an accident and enjoy the day I have. Some of these things are not easy to go thru and that’s when we find out how strong we are. Keep the faith do what you have to and always have someone to talk to and rely on More power to all of you.

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@sakota Cdiff spores can live for months on things. You could have picked it up in a doctors office, nursing home or hospital while visiting someone. It's hard to tell. It is not airborne though. Hand washing is key to an infected person. I'm happy to hear that you have not relapsed. Stay well and yes, keep the faith as you battle lung cancer.

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